Friday, June 14, 2013

Line infection

I'm sorry I didn't get a post up yesterday, but things have been moving a little quickly over here.  By the time Keegan was settled last night, I had such a headache.  The thought of turning on the computer to post an update made me nauseous.  Partly because of the headache, partly because of the events of the day.

The second culture we drew in the transplant clinic on Wednesday also grew back positive for yeast yesterday mid-afternoon.  As I mentioned yesterday, this is particularly dangerous for immunocompromised patients.  There is no opportunity to delay in that situation, and any indwelling catheter has to be pulled immediately.  So this morning, Keegan had surgery once again to remove his central line.  

The surgery itself went ok.  They put two peripheral IVs in, one in each hand.  By the time we were called back to the PACU to see him, he was in hysterics and yelling for them to be taken out.  One was lost in the fury, but the other one is still in.  He is not happy about that to say the least, and it's going to be a constant struggle for him over the next five days.  Because of his immune disorder, the surgeon gave him two stress doses of steroids during surgery.  We are praying that his extreme moodiness today has been a combination of steroids and anesthesia, rather than fungemia from yeast being released into his bloodstream when the line was pulled.  He will have to receive one more pulse dose tomorrow to protect him from flaring, and then we can return to his previous level of steroids on Sunday.  Needless to say, this infection means we will not be able to wean any more of his steroids this month.

We learned today that the type of yeast in his line, candida parapsilosis, is yet another infection that affects mainly immune suppressed patients, especially those with central lines or other indwelling catheters.  It lives on our skin and is extremely resistant to hand washing and other cleansing methods.  In fact, the infectious disease team said it's really quite amazing that Keegan has never had a fungal infection from this before, considering he has every risk factor for it.  Knowing that even with our absolute best precautions, he still would be susceptible to these infections doesn't exactly make it easier to swallow when we have to subject him to another line placement.  The fact that he has started putting his line in his mouth at night certainly increases his risk, especially when he breaks the line completely open.  

Fungal infections are so resistant that the treatment protocol differs from a bacterial infection.  With bacteria, we can pull the line, wait 48 hours, and if cultures are negative, place a new line.  With fungus, you have to wait five full days and have three negative cultures on consecutive 24-hour periods.  So the earliest we can go back to the OR for a new line is Wednesday of next week.  That means five days of finicky peripheral IVs and not getting his full TPN.  Then we will hopefully go home by Thursday and continue the remaining week of IV antifungals at home.  Because we can't trust him to receive anything overnight through his line without being supervised, that also means all of his infusions will have to be switched to the daytime hours.  So he will have to go back to carrying his pumps around all day long, instead of playing freely during the day.  I wish that a few days of that would convince him that he shouldn't play with his line, but I don't think he is developmentally capable of making that connection.  Nor for the life of me do I have any idea why he is suddenly so orally fascinated with his line.  That is something we haven't seen since he was an infant.

There are two things we are extremely grateful for in all of this.  First of all, the cultures that were drawn on Tuesday were done on a whim based on the rare need to draw mid-week labs for his rheumatology appointment.  If we had not had that appointment scheduled and waited for his Friday labs, we probably wouldn't have drawn a culture, and if the rheumatologist hadn't thought to draw them "just to be safe" after his weekend minor fever, we wouldn't have caught it at this stage at all.  If we hadn't caught it now, we probably wouldn't have caught it until he was completely septic with a systemic fungal infection and extremely sick.  Fungus is tricky that way in that there are no clinical precursors for it usually until it's very widespread.  While it's frustrating to be stuck inpatient when he's "not that sick", we dodged a massive bullet here, for which we are extremely grateful.  God was certainly watching over Keegan this week.  The second positive thing about the line removal and new placement is that we are pushing hard for a port, instead of broviac.  With a port, we can remove the needle once per week and allow him to swim!  We are at a point where his steroid load is low enough to allow him to have better wound healing capabilities and heal after a port placement.  It's been over a year since his last port, and it would make this summer so much more enjoyable for all of us.

I'm sure I forgot something in the whirlwind of the last two days.  I have a few cell phone pictures from today, but Blogger is being a little ornery and not letting me load them for whatever reason.  Keegan actually slept some the first two nights we were inpatient, but the sleeplessness has evidently returned.  Looks like I'm in for a long night tonight.  Thank you so much for your continued prayers and love for Keegan and our family.  I know I say it with every post, but we truly mean it from the bottom of our hearts.  This journey never gets easier, but it is more bearable knowing how many people truly care for our Bug.  Thank you.  

1 comment:

tbugg815 said...

Maddie,

Many hugs and prayers your way. I think of K often. Does Keegan have a chewy tube. My son wears the out. Check out chewy strechy tub from Super Duper Publications and kid companion chelwry on facebook.